Open Letter to Senator Concerning Health Care Bill

My name is Marlene DeForrest. My family and I live in Meade County, Kentucky. I am writing this as an open letter published on my blog site: www.myhopeforautism.com.

I am deeply distressed by the Better Care Reconciliation Act and the American Health Care Act. Their effect on Medicaid would be catastrophic to people with disabilities and their families. They would also result in greater costs in the long run.

My daughter, Hannah, has autism. She lost all language skills and transformed from a happy toddler to screaming and crying most of her waking hours, and being self-abusive. The head pediatrician of a reputable hospital told us to strongly consider placing her in a home. Thanks to Medicaid, we accessed behavior therapy instead. She made great progress. However, at the end of her third-grade year, I was told by a team of school professionals that she would “never be able to keep up in a regular classroom.” Undaunted, we continued moving forward. Today, she is a Junior in college, has been on the Dean’s List several times, holds a job, pays taxes, drives (better than most drivers), is a counselor at a summer camp, a leader in her church youth group, and participates in many community services.

I joined the Meade County Autism Support Group to support other families. My heart shattered when I discovered children with autism currently on a ten-year waiting list to receive behavior therapy. If Hannah had to wait that long, the results would have been devastating.

Since these bills would reduce funds for home-based care and community-based care, I believe many families will revert to being one-wage-earner families to enable care for their children at home. This will result in fewer taxes paid. Children will not have the opportunity to progress the way Hannah did, so they may not enter the work force which, again, results in fewer taxes paid. In fact, they may end up relying on government funding to care for them the rest of their lives. Also, when families can’t afford health insurance, but aren’t eligible for Medicaid, what do they do when their children are sick? They take them to the Emergency Room where they are not required to pay up front for treatment.

Like you, Senator Paul, I am concerned about fiscal responsibility. However, if these children don’t get proper care at a young age, it will have a negative effect on our economy and many, many families.

Also, like you, I am concerned about children’s health care. Hannah is a shining example of what is possible with the proper care at a young age. My heart aches for the children who don’t have the same opportunity at life. I am asking you to not approve these health care bills or any bill that will further reduce the care for Kentucky’s children.

Thank you for reading this letter and hearing my heart. I eagerly await your reply.